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According to a representative survey in Germany almost half of the population is estimated to live with at least one chronic health condition (Kassenärztliche Bundesvereinigung, 2019). That means there is a huge likelihood, that each of us know at least one person, that is struggling with this often unseen and underestimated burden.
In this three part blog series, we would like to share some of the insights gained while listening to people living day to day with conditions like ME/CFS (Chronic Fatigue), Long Covid and/or Multiple Sclerosis. We learned about their invisible struggles, the daily challenges but also the underestimated contributions these people can make to society.
The Language of Chronicity: Why Words Matter
One of the first things that came up with everyone we talked to was the desire to redefine the language used to describe people living with chronic health conditions. The term chronic illness suggests that a condition is persistent and long lasting; however, in practice symptoms can vary over time, and some chronic conditions may improve or lessen. A chronic health condition, depending on the classification being used, can be already stated after 4 weeks. In the UK for example, any condition lasting longer than three months is classified as chronic.
The term persistent health challenges may better reflect the lived experience of many, acknowledging the potential for change while recognizing ongoing difficulties. This shift in language matters, as it allows space for hope and improvement without minimizing the realities of long-term health conditions.
Scarce resources: The Spoon Theory
Living with a persistent health condition requires constant management, strategic decision-making, and a careful allocation of limited resources, much like a full-time job. However, unlike a conventional job, this one doesn’t come with weekends off, paid leave, or even recognition for the effort involved. For many, the most challenging aspect is the sheer amount of time and energy it takes to navigate daily life while managing persistent health challenges.
People living with persistent health challenges and/or chronic illnesses often experience significantly higher demands on their time compared to those without health conditions. Routine activities such as getting dressed, preparing meals, or commuting to work can take longer and require more effort. Medical appointments, therapy sessions, medication schedules, insurance paperwork, and symptom monitoring add another layer of responsibility, all of which consume more of the already limited resources of time and energy. This can create a compounding effect: the increased time required for basic tasks also necessitates additional rest periods, making it a constant cycle of depletion and recovery.
A widely used metaphor to describe this energy limitation is the Spoon Theory, introduced by Christine Miserandino (2003). In this analogy, every individual starts their day with a finite number of “spoons,” representing units of energy. While a healthy person might have an abundance of spoons, allowing them to complete tasks without much concern, someone with a persistent health condition starts with a limited number and must allocate them carefully throughout the day.
Any activity consumes a number of spoons. When the spoons run out, so does the ability to function effectively. This constant need to ration energy affects every aspect of life, from professional responsibilities to social interactions and family commitments. Many individuals are forced to make difficult choices: Do I spend my limited energy on work, or do I save some for my loved ones? Can I afford to attend a social event if it means being bedridden the next day? One interviewee framed this experience like “The budget of energy is simply not predictable. And on some days, it feels being robbed of all our spoons”
The Invisible Struggle and Stigma
These trade-offs are not always visible to others, yet they define the daily experience of persistent health challenges.This can be one of the most frustrating aspects of managing a chronic condition. Unlike a visible injury or illness, chronic conditions such as autoimmune diseases, neurological disorders, and chronic pain syndromes often have no outward signs. This invisibility contributes to misconceptions, judgment, and stigma.
People living with persistent health challenges are frequently met with skepticism or misunderstanding. They may be perceived as lazy, unreliable, or exaggerating their symptoms. Comments such as “But you don’t look sick” or “You just need to push through it” dismiss this very real struggles they face. This lack of recognition can lead to feelings of isolation and frustration, making an already challenging reality even harder to navigate.
Moving Forward
Understanding the full impact of a persistent health challenge and/or a chronic illness requires a shift in perception—from seeing it as an individual’s personal battle to recognizing it as a societal issue. Workplace policies, healthcare systems, and social structures all play a role in shaping the experiences of those with chronic conditions. Acknowledging the time, energy, and emotional toll involved is a critical first step in fostering a more inclusive and supportive environment.
References
Kassenärztliche Bundesvereinigung (2019). Versichertenbefragung der Kassenärztlichen Bundesvereinigung. Ergebnisse einer repräsentativen Bevölkerungsumfrage. https://www.kbv.de/media/sp/Berichtband_Ergebnisse_der_Versichertenbefragung_2019.pdf
Miserandino, C. (2003). The Spoon Theory. But You Don’t Look Sick. https://butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/
